[tri-med] Re: G-Tube update - Karen

----- Original Message ----- 
From: "Janet King"
> The sticky up bit... Dang Karen...  don't be so technical so we can
> understand you!!!!!!!!!!!!!!
>
> ROTFLMAO

Well it was the wee small hours of the morning and my hands are so swollen 
that I can barely type so I am surprised it made any sense whatsoever!!! Its 
a hard thing to describe. So simple when you see it :-)

I hate Foley's catheters with a passion!! Alex's had no balloon on the end 
and it wasn't stitched in. The only thing holding it in place was the 
dressing. The Foley's was latex and it was left in situ for 6 months. I 
think he had two or three changes in that 6 months, mainly from me 
accidentally pulling the danged thing out. Thats when I learnt that the 
tubes can go mouldy in the stomach it was sooooo gross. After the 6 months I 
had learnt a lot from another online list (the trisomy lists didn't exist 
back then) and started lobbying for a button. He got the Bard eventually 
(which I also don't like) but it was 6 months too late - Alex had already 
developed the allergy to latex.

In hinsight I should have sued the hospital for that, but I was non 
confrontational at that point (yep once upon a time I was meek and mild - 
BA - before Alex) so I simply followed the correct complaints procedure and 
was promised that they would stop placing the Foley's. It hasn't stopped 
them, as recently as last year I found someone who had a silicone coated 
Foley's placed instead of a g-tube. I could scream - silicone coating 
doesn't stop the latex sensitisation because the stomach acid eats the 
silicone coating away. If I had sued them maybe they would have thought 
twice - $12 for a Foley's, $120 for a button or thousands in a law suit? It 
has certainly cost me thousands to put up with the allergy and that doesn't 
take into account the loss of Alex's quality of life - sorry thats my rant 
about foley's :-)

Life consists not in holding good cards but in playing those you hold well.
                                            -- Josh Billings

Keep Looking For Rainbows!!
   _--_|\
 /Karen \
 \ _.--._ /
          v Karen, Mum to Alex (14 years, T-18 Mosaic)
http://members.optushome.com.au/karens

                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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